New York Times Article about Prospect Meadow Farm Participant

AS MY SON’S
LIMITATIONS BECAME CLEARER, I FOUND IT HARDER EVERY YEAR TO WRITE A VISION
STATEMENT FOR HIS I.E.P. THEN HE SHOWED US HOW

By CAMMIE McGOVERN

AUG. 31, 2017

NEW YORK TIMES

How do you write about
the happy life you hope for your child to have when you have a hard time
picturing it yourself?

For 18 years, I’ve dreaded the yearly ritual
of writing a “vision statement” for an Individualized Education Plan, or
I.E.P., for our son, Ethan. He has autism and, as any parent of a child with
significant special needs knows, the yearly team meeting to develop the I.E.P.
can be emotional and fraught. For us it has felt, at times, like an annual
adjustment of expectations downward. In theory, the vision statement is a
lovely idea — an opportunity for parents to articulate the optimistic future
they envision for their child five years down the road. In reality, as Ethan
grew up and his limitations — cognitive and behavioral — became clearer, I
found it harder every year to write the short paragraph. We came to see he
couldn’t live independently, get married, work in a job without support — but
if those are the givens, what does a hopeful future look like?

This year, as Ethan turned 21 and completed
his final year in the school system, he shocked us by writing his own vision
statement. Reading his words made me realize how wrong I’d been for years,
trying to articulate what my son’s future should look like.

While Ethan was still in elementary school,
our vision statements included the same wish list I imagine every parent of a
child with autism probably has: better communication, fewer meltdowns, more
independence. When he was 12, I got more pragmatic, “We wonder if Ethan’s love
of farm machinery might one day become an employment opportunity.” At 13, after
a successful stint in the middle school chorus, I wrote, “Ethan would like a
future in music, perhaps as a professional singer?” At that point Ethan was
still working on using a Kleenex to blow his nose. A future as a singer was
far-fetched, I knew, but I wrote it as a way of saying: Ethan does have
abilities. We’re serious about developing them.

This
is the great challenge parents face in these yearly meetings: You’re fighting
for teachers to help your child work toward a future that, with every year,
feels as if it’s growing narrower and bleaker. When it’s clear he’ll never
understand money well enough to make change, you cross off the possibility of
working in any retail job. When he can’t stop rubbing his nose or touching his
mouth at work, all food service opportunities dissolve as well. When his
self-talk disturbs the nursing home residents where he genuinely likes
volunteering, another door closes.

Even as Ethan bombed out at one job after
another, he stayed true to his passions: music, farm equipment, collecting
business cards. Oblivious to what looked to us like a frightening and empty
future, he was fairly cheerful on a day-to-day basis. If anything, one of his
problems on job sites was his failed attempts at jokes and “too much
silliness.”

In desperation, we signed Ethan up to work at
a local farm that specializes in employing young adults with disabilities
assuming it would go the way the others have. He’d be interested at first, then
bored, and then — because he was bored — silly and unsafe around the equipment
in a way that would get him removed from the program. It was his pattern and if
there’s anything we’ve learned, autistic kids love repeating their patterns.

What we wrote for his vision statement that
year reflects our rock-bottom expectations: “We hope that Ethan can remain with
this program for the year.”

Then he surprised us. He worked there for a month and we got no
phone calls.

After six months, we got a jolly report. “He’s
fun! And a pretty good worker for about one to two hours a day.” After a year,
we were told he’d made it onto a landscaping crew. “What do you do on the
crew?” we asked.

“Stuff,” Ethan said and listed a few machines
we assumed he was watching other people operate. He could mow a lawn, we knew,
but he couldn’t use a leaf blower. Or a weed whacker. We’ve lived with Ethan
for 21 years. We know his limitations.

At
our last I.E.P. meeting a representative from the farm came and read a report
from Ethan’s “Crew Captain.” We heard that, indeed, Ethan was operating
those machines, safely and effectively, along with this final line: “Ethan
makes us laugh every day.”

I could hardly believe it. I stole a look at
his dad and smiled.

This meeting fell at a particularly demanding
time in my life and I’d arrived without writing a vision statement ahead of
time. When I started to apologize, the vocational coordinator — a young woman
who’d struggled for four years to find a job placement for Ethan — held up her
hand. “It’s fine. Ethan wrote his own this year.” Apparently he’d dictated it to her
on a recent visit to the farm. A few minutes later, he read it aloud:

“After I graduate from high school I plan to
work at Prospect Meadow Farm until I retire and live at home with my family as
long as I can. I’d like to keep taking classes at Berkshire Hills Music
Academy. For fun, I want to play Special Olympics basketball, go to our cabin
in Vermont and the shore in New Jersey, mow lawns, and collect business cards.
My goals for the future are to take the PVTA bus into town to make purchases,
and someday learn how to drive a zero-turn lawn mower.”

For a full five seconds after he finished, no
one said anything. I looked across the table at his speech therapist who had
known him since he was 14 years old. She had tears in her eyes. I did, too.

Not simply because Ethan had articulated his
own entirely reasonable vision statement, but because it incorporated every
aspect of his present life that brings him joy. After years of fabricating
visions for a future we never honestly thought possible, Ethan was offering one
that was both optimistic and breathtakingly simple: I want my life to
keep looking the way it does now.

I wish I could tell other parents at the start
of their journey what it’s taken me two decades to learn. First, that your
child may continue to grow and change and, even at the age of 21, may surprise
you by doing things you never thought possible. Second, that in the end,
success won’t be measured by academic performance or job placement. It will
have more to do with accumulating small pleasures and filling your life with
those. I don’t know why it never occurred to me: Your future should look like
the best parts of your present.

Cammie McGovern is the author of four
books for children and young adults, all of which feature characters with
disabilities.